I almost didn’t blog about today’s celebration. It hurt too much. How does a celebration hurt? See…I lost a family member last week. Actually she wasn’t blood related but if you ask anyone of my siblings, we felt like she was. Nancy was one of our big supporters in our autism journey. Without a doubt, anytime I posted something about my girls or anytime I blogged, she would “like” it. She would never comment but if it was something really big she would send me a text message. She always sent me latest research on autism and I will never forget her eyes lighting up when Courtney got all cuddly with her on a recent visit. Nancy was also my go to person when we were having a hard time finding her favorite fruit pouch at stores. She never failed in finding them on line and get hundreds of dollars worth shipped to us. I may never open another fruit pouch without thinking about her.

So today when we had a moment that needed to be celebrated, I paused a moment and wondered if I was ready to blog about it knowing she is no longer around to “like” it.

But maybe she does know. Maybe she was the little cardinal outside our window that Courtney saw and verbally labeled “red bird”. Yep, that’s our celebration, Courtney said a two word phrase! If Nancy was here to read this I can almost guarantee she would have sent me a picture of a cardinal via text message. No message just the picture.

I actually didn’t hear her say it, her dad heard it. He was so excited to come into the family to tell me and her team of home therapists who were over what he heard. We immediately knew why it was easy for her to label it. “Red bird” is in her favorite book, “Brown Bear, Brown Bear”. Courtney has always enjoyed flipping through the book while occasionally (usually when she didn’t think someone was watching) labeling each picture by its color. As of recent she has actually trying to label each page by the color AND the animal!!!

This recent explosion of language via talker and her voice is amazing! I feel like I’m knowing more what she wants at a given time and I’m getting to hear her beautiful voice.

Nancy may not be here to “like” this post but I know she has a big smile as she watches over us.

Describing what it is like to have child who is non-verbal is not easy. Of course it is heart tugging to never hear your child call you, “mommy” or hear the three magical words, “I love you”. That is just heart tugging. That is not the difficult part at all! Having a non-verbal child means not able to know their basic wants and needs. You are living every moment guessing what they want moment to moment, why they are crying, how they are feeling, what they are thinking. Having a non-verbal child means a maddening silence in the car. Before you start saying silence could be nice in the car, I’m not meaning silence with no noises. I’m meaning, no “how was your day”, or “look mommy, an airplane”. Heck, I’d even take, “are we almost there”! Having a non-verbal child typically means more behaviors. It’s hard!

Fortunately, verbally speaking is not the only way to communicate. I am so incredibly thankful for technology. Thanks to technology, Courtney can still have a voice. But it isn’t as easy as just handing her a device and her learning how to talk.

Back in the fall of 2016 we introduced Courtney to a device otherwise known as her talker. The journey with her talker has been long and hard. First we had to find the right system. That took us a while. We were with one system for almost a year and then decided to try another system. We have been with that system for over a year now.

Teaching a child how to use the talker takes modeling, getting everyone on board, training and most importantly time. For Courtney, the progress has been slow. She learned quickly how to use single words to request her most favorite items. That list slowly grew. We started to even see some two word requests. Then with all the medical issues she had this fall, we saw regression. It was heartbreaking to watch. Once we worked through those health issues and made some modifications to her device, she started progressing again.

Within these last couple weeks we’ve seen a beautiful spike in progress! I feel like she is finally catching on to the magic of the device. She has caught on that if she uses it, she can get not only food and toys but get people to do things. She’s quicker to turn to her device instead of using other methods that are not as effective. She’s even starting to use two words together to request items such as pink iPad versus the black iPad.

A couple weeks ago I was so impressed when she spontaneously used her talker to tell me to leave her alone by pressing the picture “living room” and then pushed me away. That was HUGE for her. Here we are, a couple weeks later and she has topped that moment! Her Dad had the day off today. Usually she gets home from school on Mondays and she has a snack with her Papa. Today was different. Dad tried to have a snack with her. Courtney started getting frustrated. She then used her talker to say “go home” and pushed her dad away. TWO WORDS!!! She independently used two words to express what she wanted her dad to do! I was at work when I got the text from her dad telling me this story. I was almost in tears!

My little girl is communicating!!!!!

I’m struggling finding the words that truly explain the emotions parents (or at least me) experience before during and after an IEP meeting. I want to share every raw emotion, the good and the bad, so the school personnel who read can get a sense of what it is like to be on the other side, so other parents understand they are not alone in their feelings, and so family and friends that don’t have children with special needs understand why we are lunatics around IEP time.

Courtney’s IEP meeting was yesterday and leading up to it, I was a nervous wreck. I let myself get so worked up before her meetings even though there is typically no reason for me to be worried or nervous. I let myself get more worked up this time because placement for kindergarten was going to be discussed. When you are on the path we are on, it takes a meeting to determine what the next school year will look like. It’s not just sending your child to their neighborhood school. Now that the time is here, I am finding that harder to take than I expected. I know, it’s just a school. But it’s the school that Courtney and Alyssa were suppose to attend together at some point. I loved being in the same school building as my siblings. When push comes to shove, you knew your “people” were in the same building to help you. I remember when I was in kindergarten that there were times I would be upset and they would bring me to my older brother so he can say hi to me and that was all I needed. Nope, not the case for us. Not the path we are on. Gulp, hold back the tears and time to move on.

Let me back up though. Let’s talk about how overwhelming it is for a parent to just walk into an IEP meeting. The more severe the child’s needs are, the more staff that are involved in your child’s education. Courtney’s school team includes a teacher, a speech language therapist, an occupational therapist, a health clerk (partly because it was a re-eval and all the health issues we had at the beginning of the year), a social worker, a psychologist, and then the admin of the school and a representative of the kindergarten placement. That is 8 adults, all there to talk about the needs of my child. There actually wasn’t enough room around the table for everyone. I lead meetings like this and I still find it overwhelming.

The meeting always starts off with sharing the child’s strengths and celebrations. It’s a great way to start the meeting. I loved hearing about all the progress the team has felt Courtney has made. Some of the staff members have been a part of Courtney’s team for 3 years and it was amazing to hear the growth they have seen. This is followed by what the next steps are and the growth that we hope to still see in the coming year. It’s an emotional roller coaster! We finish talking about how great she is doing and then remember how far she still has to go. My 5 almost 6 year old is still learning how to communicate her wants and needs. Still learning how to use words. I know…baby steps. All that matters is we are making those steps forward. Who decided anyways that progress needed to be made at a certain rate for every child?

I actually wonder after sitting through a placement meeting why every child’s placement isn’t done so delicately. I was so impressed on how much detail went in to Courtney’s placement part of the meeting. A representative from the proposed program attended the meeting. Her current assistant principal stopped the meeting at one point and had me explain to the representative the events that occurred in the fall regarding her health and prefaced it with how important it is that they know how much her health plays a role in her ability to perform. You want to paint this beautiful picture of your child for a new teacher but the picture I was painting was a child with aggression and communication issues that really limit her. I know, nothing they haven’t heard, but again, difficult. And difficult to relive the moments of the fall and hear the staff even say how heart wrenching it was to watch.

I was in awe as the representative described the program that was being proposed. It was the program we observed. It truly is a perfect program for her. I was so excited to hear about the community outings they do with the students so they can generalize everything they are working on outside the classroom. Now, we also found out at this meeting that though we know the program she will be a part of, we do not know what school she will be at. The district has to open up a third classroom of this program and they have yet to determine what school it will be at and may not be decided until this summer. So as most people know what school their child will be attending, we do not know. This does leave Joe and I concerned. A structured learning classroom is so unique. It is so much more than just a classroom.  This likely means a whole knew team of teachers and therapists. It is training the entire staff and community in the school how to work with children like Courtney. This is hard to do in a year. We shared our concerns with the team. They acknowledged that they understand how nerve wrecking it is. The representative even said she would probably feel the same way. Though they assured us that opening up this classroom will not be taken lightly, we are left still with some uncertainty. I will keep holding on to how much we like how the program looks in the other schools.

I think the other emotions I’m feeling comes from the fact that Courtney has been in this school for 3 full years. Through the ups and downs of how we felt about program changes at this school, she made so much progress. She is comfortable there. She loves it there. She is happy there. But in just a few short months, we will be saying good bye to all of them and trying to find a way to thank them for all they have done. So many emotions!

In this picture, Courtney is wearing a shirt for autism awareness. It shows puzzles pieces and says “Until all the pieces fit”. Seeing so many people in this meeting shows how many puzzle pieces it really does take. But together we do find a way to make them all fit. I will forever be grateful for the staff at her preschool that helped bring her so far.

Wow, I was not prepared for all the feels I just felt in one hour. I hope I can come close to explaining it.

Today Joe and I went to observe a possible kindergarten class for Courtney next year. Let’s start with that. Feel number 1. My little girl is going to kindergarten next year. KINDERGARTEN!!! Where has the time gone and can it slow down please? Enter second feel…While sitting at this regular school that is in our district waiting to meet the principal, tears were in my eyes. This is not how it was suppose to go. It was suppose to be Courtney go to preschool somewhere and then we just register for kindergarten at our home school where all the neighborhood kids go and where Alyssa would eventually join her. We are on a different path. Yes, a path that I love but there are still brief moments where I think about that “initial” plan.

Then we met the principal. I was so impressed by her. I started to lose that feel of sadness as she passionately described the structured program they have in their building for children with autism. The tears started to fill my eyes again as she started to talk about how they keep parents informed and how they see this as highly important since they know these kids can’t communicate about their day. The daily communication, the multiple team meetings, AND they make it possible for parents to see how their child is in the classroom. I have never observed Courtney in the school setting. This even includes something like the Halloween parade. I know if Courtney sees me it may throw her off completely. Because of the technology world we live in, I could schedule a time to come to school and use FaceTime to observe her. Not sure if the principal or Joe noticed, but there were tears in my eyes. I was already so impressed.

These feels continued as we toured the building and headed to what could be her classroom. Stepping in the classroom, I could tell right away that this was where Courtney belonged. The principal showed us around the room and then asked if we had any questions. As I was telling her how perfect I felt the program was I got emotional.

I felt silly getting so emotional. Like any parent, I want my little girl to have this great education. When your child needs such a specific type of instruction to meet her significant needs, the moment you realize you found that place to meet those needs it’s hard not to get emotional.

This was just an observation. The meeting to discuss what her placement will he is in two weeks. It comforts us to know that the right placement is within our district. Hard to believe she’s going to kindergarten. Can’t wait to see where she is headed in this journey next.

“Can you say, Junior, Courtney,” asks Grandpa as they are petting their dog, Junior.

“Bampa, she don’t talk” says Alyssa.

The conversation first stung. Proof that there will always be moments that autism will sting. I only let it sting for a moment and then I let myself think how awesome it is that this little 3 year old is already coming to such an understanding of her sister.

I did make this moment a teaching moment. I explained to Alyssa that though Courtney doesn’t talk like us she is learning to talk and learning to use her talker.

A while back I asked on an autism mom Facebook group when and how others explained autism to the siblings. So many answered that it wasn’t a sit down talk, it was an ongoing process. That’s making so much sense to me now.

I am finding part of the process of Alyssa understanding Autism beautiful. Those who really know us know how stubborn Princess Alyssa is. She is a threenanger to the core! Getting her to do things for me is impossible. Except when I ask her to keep an eye on her sister. We were at the Doctor’s office the other day and I needed to fill out a form. Asked Alyssa to keep an eye on Courtney and sure enough she grabbed Courtney’s hand and walked around the waiting room with her for those 3 minutes.

One thing that’s been hard to explain to Alyssa is why Courtney does certain “bad” things without getting in trouble but when she does the same thing she gets in trouble.

Alyssa has been struggling like most 3 year olds with sharing toys. At her park district class she pulled another girl’s hair when she didn’t get the toy she wanted. The nanny talked to her afterwards about it and Alyssa’s response was, “but Courtney pulls my hair”. Well, she is right. Not easy to teach a 3 year old that the consequences will be different because of their different needs.

I chose one of the pictures for this post because it was taken during therapy. Alyssa is very much part of some of the sessions because part of our autism journey is teaching them how to play together. I love these moments and hopefully more of these moments will just happen on their own.

Learning about autism will be a process for Alyssa, just as it is for all of us. It’s a journey, but a journey we love.”

What does your meal time look like? Do you sit down as a family? Do you have everyone sit at the table until everyone is done? That is how joe and I wanted meal time to look like but that is not how it goes.

I was actually hesitant about sharing our meal time because it’s not what a “normal” family meal time looks like. Would people judge what I consider a successful meal time for us? But that’s exactly it. What is normal for my family may not be normal for others and there should be nothing wrong with that. There is nothing about autism that is normal until you change your way of thinking. This is our normal. And our normal has to be a constant work in progress.

So dinner time…

A while back we were having great difficulty getting Courtney to sit at the table. We had more success at her sitting at the counter on a stool while watching an iPad. So we went with that. Meal times became the girls sitting at the counter eating what I knew they would eat, me standing at the counter and joe sitting at the table eating something I made for the two of us. Alyssa’s booster was even on the counter.

It slowly turned into us all eating separately. Girls eating and then joe and I taking turns eating. Now…dinner basically has turned into the responsibility of the caregivers and then joe and I just eat when we get home…never together. That became our normal. It worked for us.

Our amazing feeding therapist (yes, I said “our”, not “Courtney” because honestly these therapists help the entire family) mentioned to me the importance of Courtney seeing what we are eating and being exposed to different foods. If we were eating at the same time as her I would put a small bite of our food on her plate but as we did less and less eating together that happened less. As of recent, our feeding therapist approached me about her doing some therapy in our home. She encouraged a family goal of eating together AT THE TABLE. Yes, this made me very anxious because I knew the effort it would take to change our normal, but the idea of having a meal as a family was appealing.

A couple sessions at home including one during dinner time was had. Then came the family goal of at least 2 meals a week as a family at the table. So of course the perfect time to attack this goal was spring break.

So, meal #1…I wanted to give in after the second time Courtney requested “living room” with her talker and ran from the table. I wanted to give in when Alyssa wanted nothing to do with what I served. I wanted to give in when I saw the look on Joe’s face that questioned if this was all worth it (so glad he never actually verbalized it). I wanted to give in when both girls asked for iPads. It was at that point that I stopped and asked myself what did I want out of tonight’s meal. Tonight I decided I just wanted to say we ate at the dinner table as a family. I wanted to say we made progress towards our goal. So I grabbed the iPads, got the girls to sit and told them they had to sit at the table to get iPads. And…all 4 of us sat and ate dinner together. It even ended with a beautiful daddy/daughter moment of joe and Alyssa doing dishes together!

It is important to me to have a relationship with our therapists. I build that relationship by sharing our celebrations with them. I’m sharing pictures with our feeding therapist, I stated it wasn’t perfect but we did it. She reminded me of the definition of progress by sending me this text…Definition of progress- -forward or onward movement toward a destination. I think I sometimes discredit how much progress we are making sometimes when it comes to being a family with special needs. But we are constantly making onward movement to helping Courtney navigate this world and that is huge!

When you hear autism parents talk about how the journey started with their child with autism you will either hear them say that they noticed things just weren’t right at some point in their development or you will hear some parents talk about how their child lost skills that they had. Our journey with Courtney was the latter. There were skills that she had that just disappeared over a few months. Though not many, she had some words and was even starting to sing songs but then it was gone. She was socially connected and interested in other kids. Courtney use to come running to the door to greet me!

At what point did she start losing these skills? I actually don’t even know for sure but I have figured out the general time frame by looking at old pictures of her. It’s hard to explain it and it just may be me who sees it but there’s a difference in the pictures of her. I look at pictures of her when she was a baby and in the very early toddler months and her eyes look so connected to the person taking the picture. She looks like she is there in the moment and actually enjoying being there in the moment. Then suddenly the pictures are different. There is a different look in her eyes. It is almost like she disappeared. Again, maybe it is just me as her mom who notices this difference.

Facebook has a way for you to look back on posts you made over the years on that day. Sometimes I really hate this feature. I’m sure everyone who posts regularly on Facebook has the same feelings about this feature. Memories pop up sometimes and all you can say is, “thank you Facebook but I really didn’t need to be brought back down memory lane on that one”. Then there are times where the journey down memory lane is sweet. Yesterday, Facebook brought up a beautiful picture of Courtney from her 18 month photo shoot with my sister. (I believe she was actually 17 months old though when we actually took the pictures.) When scrolling through the pictures I noticed that the look was still in her eyes. She still looked present. I took a moment to look at these bitter sweet pictures and couldn’t help but ask, “where did she go?”

Don’t worry, I really don’t dwell on these moments. A part of that little girl may have disappeared but each day I feel we are seeing more and more of those moments where she connects with us in her Courtney sort of way. I love Courtney just the way she is. Her smile and giggles light up my world. I wouldn’t trade that for the world. But, there will always be a part of me that will ask, where did she go?

I’ve been struggling with blogging lately. Mostly because I feel we keep getting into these rough patches and it is so important to me that I don’t paint a negative picture of autism. I don’t want this to be the “woe is me” blog. I want to make sure that Courtney is always seen as the beautiful little girl that she is. But it’s also important to me that my blog remains authentic. I want it to educate people on what autism is. I want it to build awareness and acceptance. I believe in order for people to get the true picture of autism, it is important for me to share not only the celebrations but the tough moments too.

I was recently listening to a podcast put on by another autism mom. Her and another mom were sharing commonalities between their sons and both mentioned that their sons were not aggressive which made it so they didn’t have to worry about them being around other children. This conversation tugged at my heart because this is not the case for me. I do have to worry about her hurting someone.

A month or so ago, we were at my nephew’s birthday party that was at my parent’s house. The kids gathered around him when it was time to sing happy birthday. It just happened that Courtney was sitting right there. I was so excited that she was going to be a part of the pictures with the other kids that I let my guard down. As pictures were being taken Courtney suddenly scratched one of the other kids. Though I know the parents understood the issue, I still felt horrible.

We take the girls to the child center at Lifetime Fitness. They are great with Courtney. Our nanny will sometimes take them there too. I got a text while at school the other day from our nanny to let me know that she had scratched another child at the center and broke skin. In that one text I lost all comfort in leaving Courtney in the child center.

It scares me that this will cause children to be afraid of Courtney. Will parents be scared to have their child around Courtney? Yes, this is the ugly side of autism but on the other side there is this beautiful and sweet little girl. Unfortunately Courtney has severe communication delays and the way she has found to communicate pain and or frustration is through aggression not only to others but herself too.

I feel the need to end with this picture of Courtney and Alyssa. Courtney has gone after Alyssa several times but Alyssa continues to have no fear of her sister. Because her sister is a sweet and lovable girl.

Princess Alyssa…where do I start. I remember complaining about the terrible two’s and people warning me that the 3’s are worse. They are right! Though my 2nd born, I’m completely new to raising a 3 year old. Boy can it be challenging! Courtney did not and still hasn’t gone through this stage!

But when she isn’t busy being 3 going on 13, you see this other side of her. The side where she knows when she has to be patient with her older sister. The side where she knows when she has to be the “big” sister even though she’s the younger one. The side where she is wiser beyond her years.

Alyssa is going through a phase right now where she is refusing to sleep in her bed. We are trying our hardest to nip this in the butt but in the process it is messing up the bedtime routine that Courtney depends on. I was lying between the two of them on my bed as I was trying to get them to sleep. Courtney was getting very agitated and started scratching me. Between my tears I worked on calming her. I guess Alyssa could sense I was upset because she suddenly asked me, “mommy, Courtney scratch you?” I answered yes. She then said, “she scratch me too today but I ok.” Which Courtney had. Alyssa was being a stinker about going to sleep but after this short exchange, she suddenly curled up with her bear and fell asleep.

I think it can be easily forgotten how a child with special needs effects the siblings. They truly are expected to mature faster and help in ways that other siblings may not have to. They learn all to well that fair is definitely not equal. Their lives revolve around their sibling’s needs.

So as much as Alyssa’s 3 year old behaviors drive me bonkers, I am beyond proud of the sister she is to Courtney.

Oh Ms. Christine, if only you knew the excuses I was starting to come up with the Friday before our session. We double booked ourselves, Courtney has had a horrible week, I have had a horrible week, it’s just too darn cold…the list goes on.

Instead I sent you a message just giving you a heads up on the tough week Courtney had. I was so bummed the week before as I felt we were back to day one. Being the wonderful therapist you are, you already had a plan on how to possibly make it easier for her but assuring me that it’s ok if we take it slow.

Well you pinned it, Ms. Christine. You knew exactly what she needed. Who knew, opening the large door to open the arena more would make such a world of difference for her. I was just hoping for a happy session where she didn’t hurt anyone. Ok, so maybe the not hurting anyone didn’t happen but we got so much more (Bumble, she loves you even though she tried to attack you). We got words! Words so loud and clear I could hear them across the arena! Beautiful doesn’t even describe it!

And Ms. Christine, I love how firm yet patient and loving you are with Princess Alyssa. I will never be able to thank you enough for including her in these lessons,

What I will never be able to fully express though is what it has meant to me to let me also have lessons. My week was beyond stressful. The minute I started brushing Toast, I could feel the stress disappear.

Ms. Christine, you have given my family such a beautiful thing to do together every Saturday. A family therapy that I will forever be grateful for. Some sessions, are better than others. Pretty sure today topped them all!

Toast, Missy, Bumble, Capone and all the others, we love you too!